The RAF Association gave Molly quality in her life.

Nine-year old Molly loves Harry Potter – she is particularly proud of her signed Daniel Radcliffe photo – and likes writing and ‘horse riding’. She laughs and jokes with her family while sitting in her motorised wheelchair.

At just 14-months old, Molly was diagnosed with spinal muscular atrophy (SMA). The degenerative condition is a form of motor neurone disease, and she will never walk or sit up and can struggle with swallowing and breathing. The condition does not reduce people’s experience of pain. Nearly a decade on Molly has had two sets of major surgery – to rebuild her hips and put rods into her spine – and has spent 84 nights in critical care in hospital. She was bed-bound for four months afterwards.

May, Molly’s mum and a midwife, recalls the thoughts that flooded her head after the diagnosis: “We started planning her funeral.” But the immediate problem was: “We couldn’t really stay in the house we were living in because it was a three-floor mid terrace. It wasn’t accessible at all. The front door opened right onto the street. You couldn’t really put in a ramp. All the bedrooms, all the bathrooms were all upstairs. There’s no way you could have put lift in – it was a very typical Yorkshire terrace. And it had reduced in value because of the market crash, so when we put it on the market, it was about £20,000 less than we’d paid. We were really struggling.”

“We were trying to move house and we realised we also needed funds for a wheelchair-accessible vehicle. So, we were a bit stuck really.”

A long 18 months later the Williams’ had a stroke of luck. They sold their house and were able to move, thanks to a gift from a relative for a deposit. And Molly’s dad, Julian, a teacher, had been a senior aircraftman engine mechanic in the Royal Air Force. A colleague heard about their situation and mentioned the RAF Association (RAFA) and other charities that might help. “I thought that was for people who had fought in the Second World War,” says Julian. “How wrong I was.”

May describes the modifications they needed to make to their new home: “We needed a ramp at the front. We needed a downstairs bedroom and bathroom. The budget from the DFG (Direct Funds Grant) from the Council is incredible; they fund these adaptations, but they do everything on a very basic level.

“Molly couldn’t get into the kitchen of our house. The doorway wasn’t wide enough, but the Council said that they wouldn’t fund opening that archway because it’s not ‘essential’ for Molly to go in a kitchen.

“The Council wanted to make the bathroom as a wet room with a shower hose so that we would hose Molly down in her wheelchair. Particularly post-surgeries that would have been miserable. Molly’s condition causes her an awful lot of pain and to sit in a bath not only cleans her but gives pain relief and therapy.”

The family wanted Molly to have more comfort and more opportunity in her life.

“And that’s one of the first things RAFA helped with when they funded the bath”, says May. “Although the Council would have given the absolute basic necessities, it was RAFA that gave Molly her quality of life back.

“RAFA funded opening the kitchen doorway, and the bath. They also supported the first wheelchair accessible vehicle we got.

Funding for their first adapted vehicle not only gave Molly the chance to go out with her family, but also made life easier for her mum and dad. Molly now goes to baking club at school and can go into the family kitchen at home when she wants to bake too.

“Molly used to have a little wheelchair” May recalls, “I was pregnant with Edmund [Molly’s younger brother] and I remember trying to lift the wheelchair in and out of the boot and it was just a disaster.”

May believes the help from the Royal Air Forces Association has had a huge impact on the entire family.

“Without the help from RAFA, we would have had a very basic adaptation here. It would have impacted massively on the quality of our life together because we both work. It would have meant that we would have been using every penny we had and been up to our eyes in debt.”

The Association has also funded Molly’s bed – something Molly is extremely thankful for: “I do remember most mornings, especially on the weekends, I would want to play with Anya [Molly’s older sister]. I just wanted to sit up in my bed, but it didn’t have a remote control: it was just like a normal bed. So, every morning Anya would grab my arms and just literally pull me upright. And then we would wedge cushions and teddies behind me. It was quite uncomfortable.”

And if no-one was awake, Molly would have to lie on her flat mattress staring at the ceiling and wait for the household to wake up. It was too difficult for her to even hold up a book to read while she was lying down.

“My new bed is a lot better with the controller. It moves the knees, so I can sit with my knees up or back raised. It gives me more flexibility, more comfort, and more independence.” Molly can now sit up and read on her own.

As well as the modifications to their home, Molly has had support to enable her to develop her creativity: the Association has helped find funds for a tablet computer.

“It made Anya jealous. She said, ‘it’s not fair’ because she had to wait until she was 11, and I’m 9, so she wasn’t too happy,” says Molly.

“It’s really good because there’s an app on it for playing the piano. It’s actually a lot better for me because with when I try play the real piano it’s hard for me to press the keys down. On the app it’s easy you just have to touch them.” Molly now has two books of sheet music by Queen. And when not playing, she loves to ride horses too.

“There’s a game that lets me do horse riding. I like it because I don’t really think I could ride a horse, so it’s just a nice bit of freedom, some imagination. It makes me feel as close to being on a horse as possible. They have a rider’s POV [point of view], so you feel like you’re horse show jumping.”

A keen writer too, Molly has a few stories in the pipeline: “I’ve been writing one about a reindeer and my favourite one is about a wolf.”

The Association has been involved with the family for more than seven years now and has assisted when their circumstances changed as Molly grew and developed. It helped find funds when the wheelchair-accessible car had to be upgraded to fit Molly’s bigger wheelchair. The Association has also helped support other members of the family.

May explains: “I think RAFA really recognises that it’s a family they help. It’s not just a Molly thing.” Stuart Carvell, who has been the Association’s volunteer welfare support worker for the family since the very start, knows about other ways to get support. May continues: “[He] put us in touch with the RAF Benevolent Fund. And the Alexander Duckham charity, which contributes to riding lessons for Anya and for Edmund’s lessons at the local football club. It’s important that they get time spent on them too.”

Dad Julian says: “I never expected to be asking for help. So, I’ve been blown away by the support we have been given, to be honest. I just want to pay something back.”